Member
Posts: 59
Registered: ‎16-10-2018

Re: January 2019 chemo starters

Hi Kip, this forum is fantastic it's really great to hear from ladies that have been or going through it, it seems like a never ending road of hospital appointments and worrying about results and other pains appearing, how did you find the chemo? on T did you also have the herceptin? administered? how did you manage around friends and family with risks of infection? I can only imagine what you've been thinking and feeling coz my chemo hasn't started yet but I've had lymph node clearance in Dec cancer in one and also had a mastectomy in November chemo after heart scan just waiting for appointment, at least your going to get help to hopefully get your life moving again, big hugs, not sure the age ranges but I'm 50 xx
Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: January 2019 chemo starters

Hello TrixieLady, this is where I am up to with my treatment...

I was diagnosed in April 18, grade 2 IDC, had a single masectomy (no recon) and SNB removal, found sentinel node and another one had cells and the third had micromet so had 3 x FEC and 3 x T chemo starting in July and finished on 24 Sept.  Then had ANC, remaining nodes in levels 1 and 2 removed, none had cancer in them phewwww.... started 15 x radiotherapy sessions on 29th November, finished 19th December.  So all active treatment finished now.  Oh and started Tamoxifen for 10 years, started in middle of November.  So far, hot flushes and aches and pains (although the pains could be due to chemo taking time to leave your system)  but needs must so ploughing on.  It seems so surreal when you see how much you go through over those months and you feel you'll never get to the end but you do.  Now I am waiting to see Radiotherapy for sign off and then I think i will getting a mammogram around the 1yr anniversary of diagnosis and then I believe its 6 months and then 1 yr and then ever year for 5 years.. not too sure.  Its a funny feeling when you get to this point... suddenly you are not at the hospital all the time and feel a bit alone.. struggled a bit to be honest but that seems to be the norm.  Suddenly you have to find you life again... I've signed up for a HOPE course at the hospital which is designed to help you move on, how to get to like you body again, how to address your fears etc.  

You ladies are doing really well, its so good you found each other, my monthly chemo forum kept me going (and still does) its only people going through it who can truly understand... 

Big hugs..

Kip

xx

LB2
Member
Posts: 1
Registered: ‎16-01-2019

Re: January 2019 chemo starters

Hi everyone, thought I would chip in with my cold cap experience. I am now in my third week after 1st FEC treatment, 2nd one on Saturday. I did the cold cap, I would describe it as uncomfortable rather than painful. I took paracetemol before as a precaution, also wore a head band to protect forehead a bit. I have been washing my hair every 3rd day with non-paraben shampoo and wearing a hairnet in bed at night to protect the hair - not very attractive. My hair has started to fall out yesterday but not too much yet and mainly from underneath, I guess where the cold cap does not have so much contact. Even with the cap you can lose 30-50% of hair. I washed my hair this morning and expected to see a plug full of hair but there was not too much. So fingers crossed.

 

I also had a Pic line fitted the day before treatment it was a bit painful for me for the first week because of the bruising but has settled down now, don't even notice it.  I have also been very lucky with minimal side effects, make sure you take the steroids they prescribe, my worse symptom was back-pain after the filgrastim injections.

 

Good luck everyone

Member
Posts: 31
Registered: ‎22-10-2018

Re: January 2019 chemo starters

Hi Debs my veins were so painful from chemo, I had a line put in last week I was so scared. It was absolutely painless and the difference it has made.

Love tbird xx
Member
Posts: 12
Registered: ‎19-12-2018

Re: January 2019 chemo starters

Hi Welsh J.  I had my second Taxol yesterday.

 

My side effects in my first week were very minor - a bit of an upset tummy on the Saturday - which was five days later (that could have been the pizza from the night before!) and I've been quite spotty (although I have been slapping on a lot more moisturiser).  My nurse said if I didn't have side effects in the first week, this was likely to continue going forward, apart from the tiredness increasing.

 

I asked about hair loss and when I'll know if cold capping is doing its job and the nurse said I should know by about session 5 or 6.  

 

They asked me if anyone had talked to me about a line (which they haven't) as having the treatment weekly can be quite hard on the veins.  I'm not sure if I'm keen though.

 

Debs x

Member
Posts: 1,751
Registered: ‎21-06-2017

Re: January 2019 chemo starters

I can recommend the Lactulose as well. I haven't used it personally, but the pharmacist recommended it for my elderly dad-said it was gentle, but effective! x

Member
Posts: 59
Registered: ‎16-10-2018

Re: January 2019 chemo starters

Hi Kip, my own GP had actually said the same about the senna, think so far constipation and not eating or sleep well was my main problem so far I find it really difficult to drink at the best of times , so that's what's on my mind also hated the thought of my hair changing but if I can find away to make it less painful it might be easier to stomach, Kip where are you up to with your treatment? Xx
Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: January 2019 chemo starters

Hello all,

Just catching up on your threads to see if I can help at all.   Much talk about the sore head... I had the same, it was really quite painful, stingy, tingly and achy just before it started to shed but once I braved it and shaved it off the pain stopped.  I think its the hair follicles reacting.   Just picture them going to sleep for a while ready to spurt out your new crazy chemo hair once its over.   Mine was shoulder length, virtually straight and mid brown (with a little fleckle of grey at the sides) now is almost white/silver grey with a fleckle of black and wavy and crazy so its an exciting time waiting to see what you will get back!

If you are suffering from constipation I found lactulose helped more than the Sennokot.. my chemo nurse suggested lactulose instead as she said your body can get used to Senna?  Not sure why it wouldn't get used to lactulose either... mystery to me!

 

Kip

xx

B74
Member
Posts: 37
Registered: ‎06-12-2018

Re: January 2019 chemo starters

Welsh j - I have no experience of Taxol (yet) but other people have said the tiredness tends to be cumulative as you go on. I don't think you should experience totally different SEs though. My MO said the taste, digestive issues etc are more with AC / EC, whereas Taxol is more tiredness and body aches.

 

Trixielady - I'm sorry to hear about your blood test results. Were you already dealing with other health issues (thyroid, blood pressure, cholesterol etc) or were these results out of the blue? I have no idea what you could do to fix it & get ready for chemo apart from just trying to be as healthy as possible (diet, exercise etc) - but probably not easy to turn around in a short time. Manuka or Lifemed honey is meant to be good for WBCs.

 

Sunnydaze - I remember someone else describing the sensation (when her hair started to fall out) as like a "migraine of the scalp". So it sounds like the headache thing might not be unusual. Have you done the buzz / shave yet? I'm planning to as soon as it starts because I've heard it makes it hurt less - but no idea if that's true. My head has actually started to feel a bit tender today, so I don't think I have long - aghh!!

 

Hope everyone is doing well. I'm just wishing time would slow down, it's like I'm speeding towards the next infusion!

Member
Posts: 1,751
Registered: ‎21-06-2017

Re: January 2019 chemo starters

Sunnydaze, sorry I can't help re headaches as I didn't have any. Is it worth giving your chemo unit a ring for advice?

Thank you for your kind words about my observation Smiley Happy A bit dramatic, but I'm trying to think to myself that if I can get through chemo, an observation is nothing! RE on a Friday though...! I was asked today if I could do some extra work next week, so definitely back properly now! I've gone back to a harder job than the one I left-I was covering PPA time before, now I'm job-sharing and teaching an age that I've not had so much experience with! Luckily I taught them a morning a week when they were in Reception and they are a lovely class and I'm enjoying being with them. They made me smile last week-I'd been wearing my wig when I returned, but ditched it over the Christmas holiday. They were very observant that I'd had my hair cut  and one thought it looked a bit of a different colour! At least my wig must have looked realistic!

I was really nervous about returning-I was off for 11mths-I wasn't sure I'd even remember how to take the register! I went back on a Phased Return and that made it easier x

Member
Posts: 1,751
Registered: ‎21-06-2017

Re: January 2019 chemo starters

Helen, I meant say smells affected me too! I thought I could smell rotten fruit and kept making my daughter's check! And my bin smelt (to me!) like a chemo smell! xx

Member
Posts: 25
Registered: ‎06-10-2018

Re: January 2019 chemo starters

Hello everyone
I am glad everyone’s chemo is going ok so far. I’m afraid I can’t offer any help re; cold capping or picc lines, because I have no experience of them.
Gencat, I am glad your return to work has gone ok. It doesn’t take long before the observations start hey! I’m sure you’ll be brilliant. I am an additional needs teacher, working in a unit in a primary school. I largely work with primary 1 and 2 children (Scotland) but haven’t worked since diagnosis in August.
Anyway, I wanted to put this out there and wondered if anyone has had bad headaches associated with their hair loss? My head feels tender as anticipated. I just wasn’t expecting the headaches. I have drunk loads of water, so I don’t think it’s dehydration.
Love to all 😘 sunnydaze
Member
Posts: 1,751
Registered: ‎21-06-2017

Re: January 2019 chemo starters

Morning Helen, good to hear from you that everything went ok with your chemo and you're managing ok.

Yes, I thought I wouldn't be able to cope with the cold cap, but once I got through the first 10mins it was managable. I had icicles on my head afterwards! I was recommended to use Simple conditioner. (Plus Simple products for showering etc)

I had a PICC line and it was fine and didn't catch. My hospital let my ED come in with me whilst it was being fitted-I'd got the impression from the literature given that she wouldn't be allowed, but they were fine about her staying. Might be worth checking if your husband can if you'd prefer someone with you. It didn't hurt, but it was nice to have my daughter chatting to me so that I wasn't thinking about it.

I just had hospital bandages covering my arm, but it might have been better to have bought a cover as I found the bandages were either a bit too looose or tight.

Definitely a good idea to buy the plastic sleeves for the shower-I got mine from Boots, it was about £5.

It was a bit of a pain to have to go the hospital to have it flushed every 7-10 days, but on the plus side I found it quite reassuring to see someone on the chemo unit regularly. (When I had a bad urine infection it was the chemo nurse who realised that both the onc and my GP had given me the wrong antibiotics, which was the reason I wasn't getting any better!)

I had some funny food cravings whilst I was on chemo-might have been a need to for carbs. After I'd had my PICC line flushed I often fancied a McDonalds-I hardly ate them prior to chemo and haven't had one since! The nurses said it was fine, I think the main thing was that I was eating. xx

Member
Posts: 12
Registered: ‎03-11-2018

Re: January 2019 chemo starters

[ Edited ]

late one here... first EC on 08.01 have 3 more to go then 4 pac. Spending time moistursing my nails with jennifer young definate beauty nail oil as read good things about it online. I cold capped - used large for better coverage even tho' I'm average wig cap size- and tied a pair of woollen tights around my head to keep it on - felt very heavy and my neck ached like hell and my face was all squashed I had it on so tight. Let's see what happens. FWIW, I'm using vit d oil on my scalp at night and minoxidyl in mornings - if you read about this online there are mixed results so I am aware NONE of it guarantees anything! I bought waterans shamppo and conditioner and planning to wash gently 3 times a week or i think my hair follicles will get clogged. I don't suit short hair so figured i have to throw everything at it and then i know i gave it my best shot whatever happens. I had nausea which disppaeared after taking EMEND anti -sickness but then it came back later in the days following my initial chemo. By day 5 it went completely. 2 days constipation from steroids and i got prunes in and drank a fibre solution - macrogol - which come in sachets and that sorted it. Nothing else to report so far - so lovely to read everyone else's journey too xx They told me at the hospital i can't eat live yoghurt while I'm on chemo and I am now convinced I'll get thrush Smiley Sad(((

 

 

Member
Posts: 59
Registered: ‎16-10-2018

January chemo

Hi Ladies, I've been jumping between threads. I see my oncologist tomorrow, I've already had a mastectomy 13 November and lymph node clearance 13 Dec . It's good to be able to see what the effects of chemo are but a bit nerve racking too. I feel like I'm in limbo don't really want chemo to start but wish it would hurry up so that life can start heading back to normal, I've been off work since my diagnosis in October due to risk of infection, due to other problems had bloods taken and my own doctor has said chemo could possibly be held off white blood cells are low cholesterol is 8 and thyroid aren't good any advice please x
Member
Posts: 4
Registered: ‎07-01-2019

Re: January 2019 chemo starters

Hi , I had picc line put in on 3rd January prior to my first treatment. I requested it as have dreadful veins and didn't want the additional stress of them not being found a vein. It's ok, procedure wasn't as bad as I was expecting, it was a little uncomfortable for a few days but is well dressed and taped down and the the nurses supply a loose sleeve so it doesn't catch in anything. It's surprising what you get used to in all this. Definitely buy the limbo picc line waterproof cover to make showering so much easier it's well worth it. Some hospitals supply foc, mine did but only had super slim size. Hope that has helped you.

due to have second taxol this week , can anyone tell me how the side effects are do they get worse. Last week was ok and bearable but anxouis re this week,

Member
Posts: 4
Registered: ‎07-01-2019

Re: January 2019 chemo starters

Been a bit off the radar since Thursday, and wow, what a busy thread this is!!! I have a lot of catch up reading to do, not to mention thanks to give to those who helped me feel more in control by offering advice and tips - thank you so much!!!

So, first FEC is done and, apart from a swimmy head and ridiculous tiredness, I seem to have managed ok.

I did the cold cap, which surprised as, after just 2 minutes in it was unbearable. My husband set a 15 minute timer on my phone and I kept watching it to get me through the worst bit and, once the nurse was there administering my reds and whites, I was less aware of it.

Must find sone unscented conditioner to take though as Herbal Essences was slathered on for the cold cap and the smell made me gag terribly. Smell has affected me massively, and so quickly too, which I wasn't expecting.

I've not managed much to eat since the end of the session, and I've struggled to know what I want. I've pretty much existed on whole grain cereal, wholemeal toast, fruit and sone soup. Sweet stuff doesn't appeal at all for now.

Could really do with my tummy sorting itself out though or I'll be struggling. I'm eating dried apricots daily and taken 2 doses of Senna Max Strength in the last 48 hours, to no avail. Is that TMI?!!! Eating less and sleeping as I have been won't have helped but I haven't been able to do more.

I've been asked to go in after my next treatment to have a PICC line. Maybe I'm being silly but win't it keep catching on clothes etc? Can it be taped down? I know it's not a huge thing in the grand scheme of things but a stringing arm from catching it on everything when I dress/shower/turn in bed etc sounds quite unpleasant. Has anyone else got one?
Member
Posts: 25
Registered: ‎06-10-2018

Re: January 2019 chemo starters

Thank you LB and you too xx
LB
Member
Posts: 22
Registered: ‎10-12-2018

Re: January 2019 chemo starters

👍💪 hugs 🤗 to all xxx
Member
Posts: 25
Registered: ‎06-10-2018

Re: January 2019 chemo starters

Yes, I felt rough for the first week too. I have got 5 days to go until my next”infusion”😵 and although I’m worried, at least I know what to expect this time🤞 I have been making the most of my time going out on my bike and walking most days and eating well. I “braved the shave” yesterday. Exactly two weeks to the day I woke up and my hair started to shed. Quite distressing even though I was expecting it. I haven’t gone for a Sinead O’Oconnor, more of an 80’s sharp flick head , with a very short undercut. It looks quite stylish and I definitely felt more liberated, not so distressed. I went with a good friend to the barbers. Barbers know how to do a good short cut and it only cost me a tenner. I liked the straightforwardness of the barber shop. Men are straight forward, no prying questions and consequently no tears. 👍Sadly, it will be a Sinead O’Connor in the next week to 10 days I guess and then baldy here I come 😥😥😥 My sister tells me I need to get my nose pierced again and a pair of big hoop earrings. Ha ha ghetto girl at 49 🤣🤣🤣🤣 Stay well and up beat ladies. Strength in numbers 💪💪💪💪😘